Archive for month: December, 2011

Okay, so my decision to stop taking medicines was in no way financially motivated…but since I’ve done so, I’ve noticed that there’s more money than usual in my bank account.

This makes sense, as I’m no longer spending the equivalent of a nice laptop computer, sometimes even a MacBook Air, per month! I’ve always known that I spend a lot of money on all my different medicines and health care treatments, but it wasn’t until recently–when I stopped spending a good part of this money–that I realized exactly how expensive it was to live with chronic illness.

I mean, this lesson was first driven home to me soon after I was diagnosed with rheumatoid arthritis. I couldn’t work, my medical expenses were skyrocketing (I don’t have health insurance, mind you…), and it sometimes came down the point where I actually had to decide between buying medicines, putting food on the table, and paying the monthly electrical bill. Sure, I had played the starving student more than a decade before, when I was at Columbia and Harvard…but back them, it was perfectly acceptable to be short of money at times. And if push came to shove, I could always call home and ask for some money.

Now, I was a grown adult; a person who entered into a series of very successful corporate jobs soon after finishing graduate school. For the longest time, money was never an issue. New cars and foreign trips were the norm, and I never had to worry about not having enough money in my account. Don’t get me wrong, though, having money was nice…but it certainly wasn’t what I was living for. I eventually became less and less happy with my jobs, and with all of the internal politics and backstabbing that accompanied them…so much so, that on my 30th birthday (on the exact day, I’m not even kidding) I submitted my letter of resignation. At the time I didn’t know what was next for me…I just knew that I needed something different; something that really made me happy.

Within the year, I moved to South America so that I could study historical and contemporary adobe construction. I originally planned on staying here for maybe two years (this was eight years ago), but I’ve been here ever since. Part of the reason why I’m still here is because I really like it. I love the different cultures and the snow-capped peaks of the Andes Mountains. I really enjoy the long lunches at mid-day, and the slower pace of life. I love the lower cost of living, and the fact that most items are hand-made and not mass produced.

Part of the reason I’m still here, though, it because I can no longer afford to live in the United States. Without insurance, I can no longer afford all of the physical therapy sessions, medicines, and doctors visits that I need in order to just keep moving. Yes, down here I pay for everything I that need 100% out-of-pocket, but at least it’s possible for me to do so, as everything costs only a fraction of what it does in the U.S. (One month’s supply of brand name Arava: $95.)

Soon after I was diagnosed, however, I didn’t have nearly enough money to pay for everything that I needed. In addition to already feeling like a huge failure because I couldn’t even walk, I felt like an even bigger failure because my life was one big financial mess. As soon as certain family members in the states found out about the predicament that I was in, they immediately started sending money. Accepting this money obviously helped, but it also made me feel guilty as hell. Like I said, I wasn’t a college student away at school…I was a grown adult…and it was hard to accept that I was not able to support myself, financially.

But if we fast-forward to the present, I’m happy to share that over the past year, I’ve finally been able to get back on my feet…in more ways than one. It’s taken me a while to learn to live within my new means, but now that I have, I’ve been able to take pride in the fact that I can now afford the basics, without having to choose between medicines, groceries, and monthly bills. I no longer feel bad that I can’t afford a lot of the things that I once was able to. I no longer feel guilty about accepting certain offers of financial help that continue to roll in. Instead, I’m happy with the fact that I can afford to pay for my current healthcare and costs of living…and as long as this continues to be the case, I know that everything will be okay. I might not have an iPad, or trips around the world…but I do have my health…and for this, I am grateful.

Living with Rheumatoid Arthritisby Tammi L. Shlotzhauer, M.D. & James L. McGuire, M.D.
(A Johns Hopkins Press Health Book)With the latest information on medication, nutrition, and resources (online and off), this volume is a complete and comprehensive guide to the management of a difficult disease.

“It is difficult to ask for help with tasks that you once were able to do on your own, but you will need to do this from time to time. If you learn to ask for help in a way that lets you keep your sense of independence and confidence, you will be much more likely to ask for the help you need. And when you get needed help, your feelings of frustration or anger can be avoided. Learn to ask clearly and without ambiguity, so that the person you’re asking know exactly how you need to be helped.

Unproductive

“I’ll just do it myself.” (Martyrdom is overvalued.)

“Can’t you see I’m in pain and can’t do this?” (It does no good to try to induce guilt in someone else.)

“Wash the dishes, or else.” (People who feel as if they are being punished for your arthritis will sooner or later come to resent your requests for assistance.)

“I can do it, but I think it’s about time for you to do something around here.” (Denial has the potential to develop into antagonism.)

Productive

“Here’s what I need help with. I know I can count on you.” (Describe the task and show appreciation; the response will almost certainly be positive.)

“I’m certain I can do this part alone, but I could really use your help with the rest of it.” (Be specific with about your needs, including what you don’t need help with.)

“I’ll clean up the living room if you’ll vacuum the rug.” (Negotiation allows equal input from everyone.)

I was diagnosed at 21. I have a particularly aggressive case, so I literally went from feeling absolutely normal, working two jobs, being active and independent to, in the space of a few months, being unable to even get out of bed on my own.

What advice would you give to someone who has just been diagnosed with RA?

Breathe. And prepare yourself. I feel like there are two levels of acceptance, accepting that you’re sick and accepting that there is no going back. The second one is much harder to achieve, and I still struggle with that. For a long time I unintentionally kept thinking in terms of “sticking it out for a while” or “Well I have to give this up now but eventually it’ll be back to normal”. It took me a few years after I stopped using high heels to be able to give them away. I kept thinking that eventually I’d want them back. Informing yourself, finding others who have been there and can help you, and being honest with yourself and others is the best way to learn to accept what you have. Once you really accept your situation then you can start learning to make the best of it.

Do you use any mobility aids?

I have a cane I use when my feet get really bad, but it doesn’t help much as my hands, wrists and arms usually hurt just as much, so leaning on a cane is pretty pointless for me. I have a walker which helps a bit more, but hate using just as much, and when the flares are very extreme I rent wheelchairs if I need to. I do not, as of right now, need to buy one. Yet.

How has living with RA helped to improve your life?

That’s a really good question. I don’t normally think of RA as something that has improved my life. Quite the opposite. I spent a lot of time thinking about this one. My RA worked really fast and aggressively so I am stuck in bed a LOT. Making plans for the future is always very tricky, and the amount of cancelled plans, and events and occasions I’ve missed are too many to count. Because of that I have learned to really, really appreciate the good days. A day in the park with my family is a treasured memory, pulling off a birthday party for my son a major triumph. I absolutely love the good days, and doubt I would appreciate them nearly as much if they were easy, or common. RA has taught me to never take anything for granted, and I can appreciate that.

Do you have any visible signs of RA?

My feet are permanently swollen and have nodules, my hands are starting to loose their shape and are knobbly. My arms do not open anymore, and I permanently limp. I also have gained a lot of weight because of the steroids, and don’t think I will ever go back to being my ideal size anymore.

Can you please describe some of your favorite coping strategies for living with RA?

My son is my absolute favorite coping strategy. I was diagnosed while pregnant, and I believe the cosmos must have done that intentionally. I received the best news of my life, and the worst, within the space of a few months. On those days where the pain is beyond what I think I can cope with, and I refuse to get out of bed, it’s my 5 year old who achieves the impossible and gets me out of bed. He reminds me what I am living for and what I am fighting for. My husband is the strength I no longer have. He’s very good at determining whether I need a shoulder to cry on or a swift kick in the butt to snap me out of my depression. He fights with me and I know I would not make it without him. My stepson is the kindest, most thoughtful child I know. I once told him that heat helps me feel better, and now on every single bad day, when he’s with us, I always wake up to find a cup of tea for me, so that the heat from the cup makes my hands feel better. I’d be nowhere without the support circle my little family is.

I know those of us who have RA or chronic pain are told to tough it out a lot. And we do. We tough it out every single day, forcing ourselves up in the morning, getting dressed even if it’s a nightmare, setting one foot in front of the other all day, every day. I know there are moments that creep up in which we just want to scream. I believe in screaming. In crying and telling the world it’s not fair. In being vulnerable and not superhuman every once in a while. And then, once it’s all been let out, in getting up and setting that foot in front of the other once again. I allow myself those days in which I never even get out of my nightgown, as long as every other day I get up, get dressed, take as much control of the day as I can, then I don’t feel guilty for those days in which I let myself just relax and the dishes pile up in the sink.

Can you please describe your current medical (traditional and alternative) treatments?

I take steroids (as rarely as I possibly can as I truly hate them), Methotrexate and Orencia. I am on very high dosages of pain medication, and take anti-inflammatories. Those rotate as they do a number on my stomach. My medications change often as nothing I have tried so far has worked.

Is there anything else about yourself that you would like to share?

Before getting sick I was very much of an optimist, and I identified myself as a tough person. I had a hard life and a very unusual one. I ran away from home at 15 and since then I took care of myself. I’m Italian, have lived in Croatia 3 years and then moved to the US. If I wanted to cross the world I’d just get up and do it. I very much prided myself in being tough, independent and needing absolutely no one. Then my world was thrown upside down. I can no longer work or drive. I will never be able to live on my own again. My pride took a humongous blow the first time I needed help to the bathroom. In the six years I’ve been sick I’ve had to re-learn everything about myself. I still very much struggle with depression. Becoming active with an RA community (via Facebook and through blogs) has helped tremendously. It has taught me first and foremost that I am not alone. Others suffer just as much, and worse. And they understand. And I can whine about having to cut all my hair off because I can’t brush it and find support, or console a mother who’s child has been diagnosed and forget for a while about my own pitiful complaints. It has been a lifesaver for me. I am thankful to each of you who have turned your struggle with RA into a means to reach others. I’m indebted to you and when I grow up I want to be just like you.

Toronto, ON (December 12, 2011) – Today, the Health Council of Canada released results from the 2011 Commonwealth Fund International Health Policy Survey. The bulletin How Do Sicker Canadians with Chronic Disease Rate the Health Care System? compares experiences of sicker Canadians with chronic conditions to those of the general public.

Sicker Canadians report using more health care services than the general population. They are more likely to be hospitalized, have surgery, use emergency departments and take prescription medication compared to the general public. Most of this group is 50 years of age or older, but 34% are adults under the age of 50.

Along with being more frequent users of the health care system, sicker Canadians report experiencing considerable barriers to accessing the health care they need. Cost being one of the major barriers. Almost a quarter (23%), said they skipped a dose of medication or did not fill a prescription due to cost, compared to just 10% of the general population. This is a significant number since 90% of sicker Canadians take at least one prescription drug, and 54% take four or more. In addition, one in eight (12%) respondents have skipped a recommended test of follow up treatment due to cost concerns, compared to just 5% of the general population.

Chronic Rants
Ms. Rants is a 30-something living in the area of Boston, Massachusetts. She is a daughter, sister, aunt, niece, granddaughter, and friend. She has had symptoms of chronic illnesses since a young age. After 11 years of symptoms, she received her first diagnosis in her 20s. Now, 9 years later, she completely has a handle on her health. Some days. Sort of. Mostly. Ok, sometimes.
Read More: http://chronicrants.com/

PhyzzEzee
Most people know me as Trish, or online as BitBat. I was diagnosed with Stills Disease, a juvenile form of arthritis, in 1949. I was in hospital for a year when I was eleven, resting basically as this was, back then, how the condition was treated. Before that I was encouraged to do ballet for seven years which was hard but probably helped in some ways. By the age of twenty-one I was suffering badly though and in great pain in one leg particularly. I ended up having a patelectomy (my knee cap removed) which then allowed me to get on with life again, although with limited flexibility in one knee.
Read More: http://phyzzezee.wordpress.com/

Is It Over Yet?
And I have hope. The greatest thing, next to those hugs that is, I have hope that things will only get….will only continue to get better. All the way around. So while I will have gloom and doom times, while I have times when I feel like warmed over camel poop, times when I want to put the headphones on and shriek into my pillow because the pain is so freaking horrible, there is always going to be, there always HAS to be that hope.
Read More: http://awholedivided.wordpress.com/

United Voices for Ankylosing Spondylitis
I personally was diagnosed with Ankylosing Spondylitis in October 2008, since then it has been an adventure to say the least. When I first found out I was actually relieved. It answered years of unexplained pain and actually made me feel like I wasn’t crazy. I had so many doctors through the years telling me my symptoms must have been in my head because they didn’t make sense. There were no visual signs or easy explanations of the pain I was going through so they would pass me off to the next doctor. I was constantly told the words so many AS patients have heard…”but you don’t look sick.” Like many people I never even heard of the disease until I was diagnosed. To hear you have a disease that will only get worse and has no cure can be extremely overwhelming not only physically, but emotionally. I felt very alone in the beginning and found that the multiple websites and support groups were vital to my own awareness of the disease. My hope for you is that this website will also help comfort you in knowing you are not alone.
Read More: http://www.unitedvas.com/

More Than RA
I am a child of God, wife and mother to 4 great kids. I happen to have RA and Fibro and am fighting to no let the disease define me. Love to quilt and craft. I love spending time with my church family,family and friends.
Read More: http://morethanra.blogspot.com/

Just As I Am
Well, the leg pain persisted. and persisted. and got more serious. In the mornings, he started shuffling like a 80-year-old-man. He wouldn’t climb into his carseat, and limped as he walked. He was exhausted, all the time. swollen lymph nodes, and intense belly pain. Our little man was hurting. If you’d like to know more about Grant’s journey with Systemic Juvenile Rheumatoid Arthritis, you can follow these posts.
Read More: http://journey2guat.blogspot.com/p/grants-journey.html